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Thread: Do I belong here?

  1. #1

    Do I belong here?

    I am not sure I belong here, but here is my story. I was diagnosed with scoliosis at 13 in 73. I wore a brace for a year, and the had a spinal fusion with double harrington rods for a double curve. I was put in a body cast from chin to hip joints and spent 4 months flat in bed. I then got a new cast and wore it for 4 months but I could walk around. I then got a cast that stopped under my arms to the top of my legs and wore it for 3 months.

    While I wore my cast I lost alot of weight, mostly from total lack of appetite. I had no feeling of being hungry whatsoever. At the top of my incision, I got a bulge that eventually opened up and started draining. Drs said it was an undissolved internal stitch and cleaned it out. It healed and came back over and over again. During this time I lost more weight. Drs decided I was anorexic nervosa. Never mind that I didn't think I was fat. I just didn't feel good and wasn't hungry, and had alot of hip pain. It wasn't an image thing ever. Anyway, three years later they remove the top harrington rod and do alot of tissure debridment and my back heals and I gain back the weight even though I still never had a sensation of being hungry.

    My spinal incision is from about 2 inches below my neck all the way to my tailbone. Almost all the vertebrae were fused except at th waist. Anyway life was normal from when I was 17 to when I was about 29. I got another bump, and it started draining. Again it would drain, then heal, it always has some tissue but most liquid drainage. This went on for the next 10 years with just antibiotics. I also developed hip and leg pain from what they call flat back syndrome where I have no natural small of my back now. My hips are in a permanent tucked positon like I am doing a pelvic thrust.

    Anyway after 10 years, it was decided they needed to remove the second harrington rod. This was in 2000.
    A few years ago I noticed the bottom of my right foot felt like my sock was always bunched up down in my shoe. Slowly I got numbness all the way to my knee.

    I had an MRI and they found an intradural arachnoid cyst. They tried to do a lumbar puncture but my vertebrae were so fused that they couldn't find an opening for the needle to go through. Three different doctors tried. Anyway I met with a ortho doctor, who referred me to a neurosurgeon, who referred me to another neurosurgeon. I am not sure if it was because they thought the next doctor was better for the procedure, or they didn't want to get involved in such a mess.

    So I was diagnosed with a large intradural subarachnoid cyst with cord compression. The neurosurgeon went in and was going to try to clean it out, but landed up inserting a shunt because they cyst was under alot of pressure. He said that the dura mater was very fragile and kept wanting to tear when he was trying to close me up. So we wait 6 months, another mri, and the cyst is still there. They repeat they procedure and put in another shunt higher up but with an extension that comes around and drains in my chest area.

    After 3 months I have a MRI, no change in cyst. I am now numb thoughout my whole leg with my foot being totally numb and now my left leg also has some numbness. My butt is also mostly numb but I have control on my bladder and bowels.

    Trying to walk is weird. Sometimes it is sort of ratchety or spastic. Since my feet are pretty numb I have alot of trouble with balance. Anyway I am recently trying to go on disability because of the pain from my hips, and I don't know what I will do if they deny it. I am worried that it will be denied just because I didn't explain myself well enough in the forms.

    I guess that is enough, I didn't mean to write a book.

  2. #2
    Senior Member
    Join Date
    Aug 2007
    last house on the left
    Hi Patty,
    Sorry for all that you have been through. It sounds like a long and painful journey to this point. Sure you belong here. Don't even worry about that. People here have many different spinal conditions and illnesses. Judging from how you wrote about your life in your post above I would not worry too much about your ability to explain on your disability form. You certainly did a good job telling us about yourself. Welcome to CC!

  3. #3
    Thanks, I used to try to pretend that nothing was wrong. When things got worse and I had to talk about it even to a doctor, it would make me cry. I think because in my head it sounded like whining. And I didn't want to be a whiner.

    Now I can mostly talk about it, it I just talk and don't think when I am talking. I like all my doctors but I guess that doesn't neccessarily mean I am having the best care. I take pain medication but just enough to get my essential things done. I am thinking of asking for more round the clock medication so I can maybe do pleasurable things too. It has always just "hurt my feeling" that I am dealing with this. pisses me off mostly.

  4. #4
    YES PK You belong here just as much as the rest of us! Sounds like you been through it. From a fellow Hoosier!

  5. #5
    Thanks, I read your profile and feel for you also. I have spent the last 35 years trying to ignore there was anything wrong. It made life easier. Now that I am at the point where it is obvious things aren't right, I feel self-conscious and want to stay home but try not to give in to that. I admire your helping others going through problems and staying positive. Thanks

  6. #6
    Senior Member
    Join Date
    Aug 2007
    last house on the left
    Patty, I think a lot of us felt the same way as you did/do. I ignored the pain in my shoulder's as long as I could because I did not want to admit that I was having additional problems, to myself or anyone else. Sometimes denial works to protect our psyche and at other times it just plain gets in the way. I remember the day I finally made the decision to stop pushing myself in a manual chair (I am a quad). I was on the sidewalk, it was a beautiful day, and I could only push about three pushes and then I would have to take a break and wait for my shoulder pain to lessen a tiny bit. If the sidewalk hadn't been filled with people I probably would have been wimpering, but I would not let them know anything was amiss so I pretended I was studying the buildings instead of the real reason I wasn't really getting anywhere. This had been going on for a few years, but this particular day I realized I was too restricted and that I had given up doing a lot of things simply because if I had to push more than a few feet it was too painful. Even then I did not want to do what I felt then was "giving in." I now realize that was stupid pride, but it took a therapist to point out to me how much I was restricting my own ability to have any fun, or even to get my responsibilities done. So, do not stay at home if you can prevent it. There are lots and lots of people with disabilities out there doing things, so you do not need to feel self-conscious, or at least not to the point of preventing you from having some fun.

  7. #7
    Moderator jody's Avatar
    Join Date
    Jan 2004
    east o the southern warren
    welcome to carecure. oh man though, you can whine if you ever need to. I think we have a swear thread too somewhere. dont get too discouraged if you are denyed by ssd the first time you apply. They will have one or two of their Drs examine you on appeal, and eventually you get it.

  8. #8
    Welcome home PattyKay, Here is the only place I know where people understand. You can curse cry on the bad days and support others on the good days and we pretty well treat each other with respect.

    I'm sorry for your struggle.



  9. #9
    Hi, PattyKay. I kinda just figured out I've probably been using the wrong 'forum' - just found this one today, but even being a 'new' SCI/D the 'old' "New SCI's" still let me stay. This is a really cool group of people, sorry you're hurting, but glad you're here.

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